My phone exploded when Jenny McCarthy appeared on Oprah. “Jenny’s got a kid with autism, too. Do you know her?” Oh, the similarities between her life and mine: both single moms, except she has Jim Carrey and I don’t; both with autistic children, except she has one son on the spectrum and I have three; both blonde, no exceptions there.
My sons are 6, 4 and 2 and all are affected by autism spectrum disorder in various ways. One bangs his head on the wall, another experiences tremors of anxiety and the third is prone to accidental self-injury. They all have substantial speech delays and the world’s most beautiful brown eyes. So, you can call autism a disease, disorder, difference or disability. Call it whatever you want, but I love my brown-eyed boys.
I have raised them alone since the birth of my youngest son. I am a stay-at-home mom who is never at home. I wake up, burn the Pop-Tarts, deal with meltdown number one, make my oldest son’s Celexa-Adderall cocktail, fix lunches, deal with meltdown number two, get us all dressed, deal with meltdown number three, brush teeth, load up the car, deal with meltdowns number four, five and six and head out for the day. It’s not unlike what other moms do, except maybe for the meds and some of the meltdowns, but I’m sure other people burn Pop-Tarts, too.
My friends help me keep one foot in the world that isn’t autistic. They take me out and remind me that red wine is delightful, the perfect wrap dress accentuates any figure and I am not alone. We go to dinner, the theater, clubs and concerts. We even got tattoos one night. Mine says “brave.”
I once saw a bumper sticker that said: “Autism. Be understanding.” I wish I could buy a million of those and plaster the planet with understanding. I have countless stories of dirty looks, malevolent avoidance, rude comments and nasty laughter. If it breaks my heart when my sons experience cruelty, then I can only imagine what it does to them. It still surprises me to learn that kindness is the exception and not the rule.
Just before Christmas, two of my boys were invited to a birthday party, which consisted of a trolley ride around downtown Chicago to look at lights and dinner at the Rainforest Café. It was a recipe for disaster, I know. But, as a single mom, if I want my special kids to have typical childhood experiences, then I have to take them. Nobody else is going to do it for me.
So off we went to the “Big Green Frog Store.” At dinner, neither of my kids was remotely interested in being seated. They were exhausted, famished and overstimulated. The café features roaring animals, flashing lights and a steam waterfall. Sensory overload was complete and I was one woman waiting …
For the volcanic meltdowns.
These involve crying, screaming and sometimes biting and bruising, but I never know how long they will last, maybe five minutes, maybe 50. They might happen for no reason, or maybe a tiny reason, or even a real reason, but they just rage and rage and batter and last. Thankfully, the volcanics usually alternated children; my sons never had them simultaneously.
Until that night.
My oldest son was flailing; he lost control of his body. It was unlike anything I had ever seen before. The autism in my kid this night was a stranger to me. What was happening to him? Why was he hitting me? Why was I having to restrain him? What was going on?
Meanwhile, my middle son was “sandbagging” all over the place. He’s a very meaty kid, with a special gift for going limp in the most inopportune moments. If he can’t deal, he collapses into a big blob. Sandbagging is extra-special when accompanied by the torrential wail in public.
Management complained because my kid was lying on the floor. Customers complained because my kid was screeching without coming up for air. I couldn’t complain because this was my life.
I gave up. I headed for the exit. I needed man-on-man defense for this situation, but I was alone. And then, my oldest son ran off while I was waiting for the valet. Should I save my kid from traffic yet abandon my other boy or let one son get hit by a car so that my other one is not kidnapped?
A security officer had mercy on me and retrieved my son. Panicked and sobbing, I strapped my kids into the car before they could run away again and I sped off. I didn’t even wait for my change. The valet got a $10 tip that night.
I didn’t know how to make it home. I wasn’t sure how to drive. I was shaking. I had witnessed a monster and it horrified me. Daily, I beat the autism bully down with therapy, intervention and tender love. Tonight, it came at me with fangs and hair on fire.
I barreled forward and used my cell phone to institute the red alert. I usually don’t need someone else to help me through the ugly bits, but, in that moment, I did. My dad answered, the man with a doctorate in listening.
And then he spoke: “You need some help. You can’t do this alone. Nobody can.”
And that was it, but I got it. I was human, not a superhero. I wasn’t expected to survive that outing alone. I should have help with this. I should have a two-parent family. I should have man-on-man defense.
But, I didn’t. It was just me. I had to drive that car and carry those kids inside and put them in their pjs and pay the sitter. I was just going to get us home. So, I sobbed and drove, carried them inside and put them to bed, but I skipped the pjs. I paid the sitter and decided a hot shower might help me quit crying. As I undressed, I walked past the mirror.
And there it was, in the small of my back. My tattoo. I was brave. I remembered. I thought of all I had been through and suddenly that night was nothing. It didn’t even come close.
I could do this.
I was brave.
I didn’t lose courage that night, it’s just that I was surprised. I had known autism for so long, I thought we were familiar acquaintances. But the autism bully with fangs and hair on fire was unexpected. Who’s this guy and what’s he doing to my kids? Go away. You don’t scare me.
Soon after, my best friend gave me a framed print. She found the font I used for my tattoo and reprinted it for my wall. She said, “You don’t need a tattoo to remember that you are.” And there it hangs in the middle of my house. I pass by it a few dozen times a day and I remember that I am.
Jennifer Wheeler is an Evanston mom with three sons.